I am a mom of 3 beautiful kids. Marley has autism and left hemiparesis Cerebral Palsy. Skylar has recovered from sensory processing disorder and my boy, Xander, is neurotypical with severe, life-threatening food allergies.

Saturday, February 20, 2016

In Sept of 2014, we took on a new doctor for my then 11 year old daughter with
autism.He is MAPS certified (Medical
Academy of Pediatric Special Needs) and came highly recommended, especially for
those kids that have low methylfolate in their cerebral spinal fluid, as my
daughter did.He is also very versed in
mitochondrial problems in kids with autism spectrum disorder.He put her on prescription high dose folinic
acid (not folic acid) for her cerebral folate deficiency and also asked us to
trial LevoCarnitine for possible mitochondrial dysfunction.L-Carnitine helps to carry fat into the cell and convert it to energy. Although her
Carnitine panel was normal and her serum amino acids testing was cleared by
mitochondrial specialists at our local hospital, he told me that Carnitine is
stored in the tissue and muscle and not in the blood, so blood testing for
Carnitine can be unreliable.Our local
pediatric neurologist also confirmed this information with me.In addition, one reason for low folate in the
cerebral spinal fluid is a lack of ATP (energy) to get it there.

Our introduction to Leucovorin (high dose folinic acid) for her low folate levels was rocky and she
reverted back to her very irritable self… the likes of which we had not seen in
YEARS.Then I added Rx Levocarnitine
(prescription generic Carnitor).We
immediately saw positive things with the addition of LevoCarnitine.She calmed right down but she was no longer
fatigued all the time.She stopped
constantly yawning.She started to
perform better in school.I was
amazed.

The following year, in Sept 2015, Marley sat in this doctor’s office telling
him that she feels “bouncy” in class.She had just started middle school and her biggest issue was having to
sit through 45 minute periods.It was
clearly an attention problem.He ordered
our standard work-up and suggested that we double our levocarnitine dose.She was already on a quality B complex, so
were supporting her mitochondria that way.I asked… “But, why do we want to increase her energy?She is already bouncy?”He said “We want to increase her brain’s energy
to function.”And boy… was he ever
right.

Interestingly, the Carnitine panel again showed completely normal… even after
supplementing it for a year.

After doubling her dose of levocarnitine, she is now able to sit through class
and focus on the task at hand.She is
finishing my sentences for me.She is
playing piano.She is getting all A’s
and B’s in school.

Let’s let that last statement sink in……This was a child that had SEVERE, nonverbal autism.She was completely detached and could not even
function in an autism classroom.Now,
she that she is being treated for her mitochondrial problems and her cerebral
folate deficiency and is eating a dairy free diet with only whole foods and
nothing processed, she is conversational, 100% mainstreamed in school and
making A’s and B’s in the regular curriculum.

This study showed that with the addition L-ActylCarnitine ,“we
observed of a stronger reduction of hyperactivity
and improvement of social behavior in patients treated with LAC, compared with
the placebo group.”

We use prescription levocarnitine but there are brands that are over the counter
that are reliable as well, such as the NOW brand. Since L-Carnitine carries fat into the cell, it should be taken with a fatty food.

I think that it is important to realize that when the body goes through major
changes (such as puberty), more ATP or energy is needed to fuel that
transition.If the mitochondria are
already impaired, the brain’s function will suffer and the child will lose
focus. This is not an all or none type
of situation.The mitochondria can be
impaired without having full-on mitochondrial disease.We call this mitochondrial dysfunction.In kids with autism, we see this manifest in
many ways including, but not limited to, seizures, Cerebral Folate Deficiency,
inflammation, oxidative stress, impaired methylation, iron deficiencies,
thyroid problems and so on.

Her pediatric neurologist saw her last week and was very pleased with her progress saying that Levocarnitine and Leucovorin are very safe, low risk supplements even at prescription strength, so he feels very comfortable with her protocol.

My hope is that when parents and doctors alike see issues of attention
deficient disorder in their children and themselves, they will begin to look at
the biochemical pathways and biomarkers for mitochondrial dysfunction to find
the best and most effective way to treat this symptom of a larger problem.

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About Me

I am a mom on a mission to bring our daughter back to us from the grips of autism. This journey has shown me the importance of nutrition and supplementation in ASD kids, detoxification, green living and a great support system for healing. I have learned many lessons...some the hard way and I have created this blog to help anyone who may be interested in the lessons we have learned.